Why I Choose to Share My Chronic Illness Story
Most people have gotten hurt at some point in their lives. A broken arm, a sprained ankle, a sports injury. It’s pretty normal when you see someone wearing a cast or brace to ask what happened. Most people expect an easy answer.
“I tore my ACL at a soccer game,” or, “I was running and twisted my ankle.” You never expect to hear that they have a serious disease or were traumatically injured.
But sometimes that’s the truth.
Since I’ve gotten out of my wheelchair and regained some use of my legs back, the questions about what happened have become more difficult to answer. I expected as the braces and devices lessened that so would the questions. But this didn’t happen. Every stage of the way: from a wheelchair to two simple braces on my left leg. I figured people would assume I had sprained my ankle and move on, but once again this was not the case.
Now that I look back, I think the “scarier” devices made people afraid to ask. The idea of a wheelchair making someone uncomfortable to talk to or be around is a concept I will never understand, but unfortunately a lot of people feel that way. So I’m assuming with something as simple as a leg brace people’s fear of asking is decreased.
I know a lot of people with chronic illness and traumatic injuries that impact mobility and function don’t like to answer questions. They’d much rather say, “It’s a long story,” or give a one word answer. And I completely respect this, but as much as I understand their point of view, I see the situation differently.
Some people are uncomfortable or insecure and others think it’s plain rude. Most of the time, I don’t perceive it as rudeness. There’s a fine line between being overly nosey and asking questions with good intent. But curiosity is part of human nature, and if you don’t tell it like it is, people are going to come up with their own explanation. People are going to overstep their boundaries. Everyone does at one point or another. That’s just the way it is.
You see, avoiding the questions can further limit people’s understanding of what having a chronic illness can look like. I don’t want their pity or sympathy, I want them to understand as much as they can. No, they’re never to going get it unless they go through it personally, but a basic understanding can always be achieved.
But today made me think… How am I supposed to answer their questions? Am I supposed to tell it like it is or give them comfort by shielding the truth? Are they going to judge me or pity me if I tell the whole story?
A few weeks ago, two instances of the same question struck me. It wasn’t new or abnormal, in fact I’ve been getting it for almost a year now, but something about it stood out.
“What happened to your leg?”
One from a teacher and one from a student, and both with one hundred different ways to answer.
It usually takes me a minute to process them and decide what they want to hear and what I want to say, but I’ve gotten to the point where I say one of two things. Either, “I have a nerve problem with my legs/in my spinal cord,” or, “My legs didn’t work for a while, and leftie’s just super weak so I have to brace it.” This satisfies some people, and others are still curious and continue to ask. The depth of my answer always varies depending on how comfortable I am, but no matter what I continue to respond.
In the first situation I was approached by a teacher I don’t know very well. The conversation goes along the lines of:
“What’d you do to your leg?”
“Oh, it’s kind of a long story.”
“Is it at least a funny story?”
“No, not really haha, just a long one.”
“Oh, come on I have time.”
“I don’t really want to talk about it, sorry.”
The pushing went on for way longer than I was comfortable with, but eventually he left. The situation was too uncomfortable for me given the lack of relationship along with the time and setting.
The conversation with the student went something like this…
“What’d you do to your ankle?”
“Oh, my leg’s didn’t work for a while, but now my left one’s just weak, so I have to wear this brace to help me walk.”
“Did you have to get surgery or something? Was it like a sports thing?”
“No I have a type of nerve disease that just screwed up my legs.”
“Oh shoot, so you like couldn’t walk?”
“Oh, I’m sorry. I’m happy you’re feeling better though.”
I don’t know what compelled me to tell him as much as I did. And surprisingly part of me wanted to tell him more. I wanted to tell him that, no, I’m not feeling better, but that I was happy that he asked. I wanted to tell him thank you for not being weird about it and instead being kind.
In these two instances, I avoided the teacher’s questions and tried to explain as best as I could to the student. I don’t know what compelled me to tell the student that I barely knew part of my story and avoid the other’s questions entirely. I think it came down to the environment and their unspoken predictions of the conversation.
But if you know me, you know I like to share what I go through. I hope that by doing this someone going through what I am will find peace a little sooner, a little easier, and with a whole lot less fear.
The more we share, the more we have.
And today, I choose to share.
Getty Image by Ranta Images